In the past 2yrs on this journey I have been able to get a break and have some alone time doing what ever. My DW has been watching alot of TV and Movies. Last week something new started. I went to a caregivers support group and she called me on the cell phone crying because she did not know where I was and it around 7:00pm I had been gone about an hour. I had wrote her a note telling her where I went and when I should be back by. This does not help she forgets about the note and then gets scared. I hope this is a phase and I will still be able to get away.
The "leaving alone" varies by the day here. If he's having a good day, I can leave for awhile. I do call him when I'm gone about every 1/2 hr. to see that he is okay. Sometimes he has forgotten where I went, or even that I'm gone! I can't predict. That's why it's so difficult to plan any get-away time. I tend to do it on the spur of the moment - depending on his condition at that moment.
there are so many of my social activities that I have dropped out of, because the day I was going... turns out to be a bad day for leaving him. It's like he knew I was going out that day, so he gets up needing me to be here, frightened or nervous or shaky. now that I've joined an Alz support group, I am hoping I can continue to go to the meetings. It's held at a nursing home, and no respite care is offered. I'm sure he wouldn't want to hang around there anyway, and the help wouldn't knownot to let him leave. Sometimes I can leave him, but I try to accomplish things when he's sleeping, and darned if he doesn't wake while I'm gone and then worry. I always leave a not, and my cell number, but he doesn't know how to use the phone anymore. I bought one of those phones with the pictures on it, and we've gone over how to use it numerous times, but to no avail. I do have friends and neighbors who have offered to stay with him, but he's not quite at that stage. I've had a friend of him, take him out to lunch, once so I could meet an old friend. It's so hard at this stage. I think to myself when he's worse, I'll be able to get someone to stay with him, but now, it's just hard.
chris, I had a lot of that during the time when I could leave him alone. He didn't like me going. He would have a bad day. There was no way to make plans. So I didn't go. I got isolated a lot earlier because I didn't go.
Once I realized that it had changed, that he wasn't unhappy that I was going somewhere, but was afraid to be home alone, I didn't even try to go anywhere.
I've had neighbors who have taken him out to lunch so I could have some respite, some me time. Generally not enough time to actually do anything and generally I don't get to meet someone too. I'm not sure he would go with anyone anymore. So we've gotten to the point where I need to either do day care, or bring someone in, or both.
But you are so right. That in-between time when having official help does not work because it is too soon is very difficult.
PLEASE---get some help in to do housekeeping, and once your LO is used to someone else being there, go run an ereand or two. It doesn't take long to get them used to the idea, and then you can arrange specific respite times when someone comes to keep them company, cook them lunch, whatever while you go to your caregiver group, shopping, visiting, whatever you want to do. The sooner you start the better for both of you. Your LO won't be afraid or get into problems; you'll get the respite you need to keep going. Allowing yourself to become isolated is shooting yourself in the foot. I'll repeat one of my mantras. Just because you can do the housework doesn't mean you should be using your time and energy doing it. On your plate are many more, more important things. You'll get double mileage out of getting help in, when your housework gets done and your LO is safe, while you take care of yourself and the other stuff on your plate.
What "excuse" do people use who have begun introducing help? Do you hire someone whose specific function is cleaning? Do you hire someone from a caregiving agency whose primary function is caregiving, but tell your AD spouse that the person's function is housework?
I know I'm not quite there yet anyway, because anywhere we go--everywhere we go--to lunch, to pick up the 12th grader from carpool, to the grocery store--is the highlight of his day, and he's ready to go. I don't think it would be time yet, as boring as his life is, for me to say, "No, you stay here with [person he doesn't know.] I'll be back soon."
Emily, that is the same reason for me, dh loves to go anywhere and I don't dare MENTION that I might have to go to the grocery store later on, or he goes and gets his coat on and hovers near waiting for me to get ready. He is bored stiff at home; that's the reason I'm trying to get him to go to day care.
I think the interaction with things and people is good for them as long as you can handle it. My DH used to drive me crazy in a large grocery store or other. He would not stay with me and I spent half my time looking for him. He can no longer go in the stores because of mobility issues. Most days I take him through the drive-through for a simple breakfast or lunch. I have a caregiver or relative stay with him a couple half days a week. I tell him she is going to do housework for me and keep an eye on him in case he should happen to fall and need help. Sometimes I tell him I have a Doctor appointment. Today and other days I leave him in the locked car and run in a small store for less than 10 minutes. I will not be able to do the latter as it gets colder.
He has never liked me to leave him but lately seems ok with our arrangement. I usually bring him home a coffee or some other treat. I would have a problem leaving him with a stranger until he was used to her or him.
The advice given earlier about staying home with a new caregiver and your spouse a while until they get used to each other will be my plan when I need to get a new caregiver.
My problem is DH is so bored staying home all the time and I feel guilty leaving him here when I go out. I don't think he has ever adjusted to being retired and now there's so little he's capable of doing. My daughter stays with him occasionally while I enjoy a little time out by myself but that's not often enough. Like Imohr, when I take him with me, he wanders off to another area of the store or if we're eating in a restaurant, I'm concerned when he wanders off to the restroom. He hasn't gotten lost yet but I never know when that could happen. Just never at ease when he's with me or when I leave him at home. {sigh}....
Exactly lmohr. Get them used to the helper in the house, then introduce the concept of you going without them.
Our helpers come from an agency--they do personal care and in-home help. In-home help is a whole list of possible things to make/keep the living environment good for the client--dishes, laundry, sweeping, mopping, cleaning bathrooms, bedrooms, vacuuming, cooking, grocery shopping, etc. Personal care is just that--helping with showering, bathing, shaving, shampoo, dressing, making a lunch, etc.
This doesn't mean you take away their going away with you. It means creating another option and getting it in place---BEFORE IT IS ABSOLUTELY MANDATORY. Getting them used to other helpers, will, I believe, make it a bit easier on our LOs when there comes the time something happens and there is no longer a choice. Heaven forbid, you could become ill or hurt. Who are they going to expect to help them, then? Who will they accept help from? Who is going to be somewhat familiar with them and know how to work with them?
The objective is to take care of our LO the best way we can and take care of ourselves. Utilizing helpers a few hours a week does both, and we're (both LOs and caregivers) better for it.
I may be the odd one here. I go to water aerobics 3xweek and am gone about 3-1/2 hours. He just sits in his chair and either looks at the paper or watches TV. Some days he doesn't even get dressed. The last week or two he has told me every day as I get ready for my ride, "I get so lonesome without you." I told him he could come and exercise with me; he can bring his paper and read it outside the pool area by the fireplace; he can go upstairs and use the equipment. He does not have to stay home and unless it becomes very evident that he can't be left alone, I plan to go out.
I will hire someone to come in and stay with him if he gets in bad shape. I think my exercises are very important for my own health and well being and don't plan to give them up.
And, you know what? I do not feel one bit guilty. Hope that doesn't make me a bad person.
No Mawzy, that sounds good and perfectly appropriate. I would (and do) bring Jeff with me to places if there's somewhere comfortable and safe for him to sit with a book. My only concern is that if it takes too long, and he decides to look for a bathroom or something, he may not be able to relocate where I'm supposed to meet him. That's one of the reasons I'm interested in the potential of GPS location technology.
Here is our routine: The aide is here from 10 to 2, MWF. I go to my exercise class, maybe run an errand after. While here, she does some housekeeping chores, keeps my husband company, makes his lunch, encourages him to go on the treadmill, etc. When I come home, I help him shower, dress, I do the same and then we go out together. We visit my Dad, food shop, get manicures, go out to dinner, do whatever. So it's a combo of both--I get my own a.m. time, he gets to go out in the afternoons. Occasionally I have to alter this and stay home in the afternoon, when my paperwork backlog builds up and I need time to tackle it. The only downside of this--it doesn't provide much "stay at home" time during the week. I usually pick one day on the weekend to stay at home all day, to decompress. The weekday schedule, when I'm out all day every day, sort of mimics my old work week. On Tues/Thurs, I take him to daycare and do errands, meet a friend for lunch, etc. It's an active schedule for both of us, but it works so far.
Mawzy, I think that is wonderful. And I don't think you should feel one bit guilty. If my husband was reacting the way your husband is reacting I would do the same. Obviously he is in the minority with not relying on you being with him 24/7. Actually my husband never wanted me to go places by myself and do my own thing so I am not surprised he is doing so now. He was always jealous and controlling of me. We were 19 and 17 when we married and I had no experience about setting boundaries for some of my own independence.
So, personally, I think you should continue enjoying your water aerobics 3xweek or whatever else you want to do right now and feel very good about having a husband with demential willing to let you do so. Again, this disease is a day to day situation and we have to "go with the flow" and the time may come when you won't be able to let him stay alone - or it may not. This disease is different in each person. Yes, the water aerobics are very good for you, both physically and mentally.
Mine doesn't mind me going out, and he just sits quietly and watches TV until I return. I don't leave him for more than about an hour, though, don't go far away, and usually give him the option of going with me and waiting in the car as I come and go. He never watched much TV until now; now he does like it and seems to get a good bit out of it, though he doesn't retain very much. Same with listening to the car radio; he mostly really likes that.
I know all the arguments about not leaving him in the car but a) he can't undo his seat belt; b) I'm never in a store for more than about 15 minutes; I've never been a shopper; and b) physically he couldn't move around if he did get out of the car. He never objected to my taking over the driving. He basically just loves to be babied!
Lmohr, my husband is like yours: he NEVER wanted me to be going off doing my own thing, even before AD. I did have a few things but he always pouted, said I should feel flattered that he always wanted me around! For a while I spent a week in the States with my folks every summer on my own, but that was the only "vacationing" we've ever done separately. Later he decided to come along on these trips. We had our own company, were ambitious and worked together more than full time for many years, so even going to work was "together;" we were a good team. I had a part time job teaching English lit, but I eventually gave that up when it clashed too much with the company. So it's not surprising that he doesn't want me to go off on my own now.
My DH has never stopped me from doing what I wanted as far as classes for different things or for the church. I don't know if he will stay like that. This morning he didn't want to go to church so I told him to go back to bed and I would go alone. I got home about 10.00am and he wondered where I was! The service starts at 8.45 and we were out by 9.40. I am starting to wonder how long I can leave him alone. I guess I will have to play it by ear.
Jeanette, we also had our own businesses all our married life and we worked side by side as a team like you described. Whenever I would mention getting a job of my own or taking some College Courses he either started another business or found more things I could do in the one we had. I believe he has always been insecure and my presence has always been his "crutch". We have owned half a dozen businesses including Retail Stores, Resturant, Insurance Agency. Never got "rich" with any of them but made a decent living.
This is a very important situation that touches on two issues I have recently discussed in blogs - what they can do one day, they may not be able to do another day, and the only way of finding out is when they didn't do it, and by then, it's too late, and could be problematic, if not disastrous. The other is that something we THINK they can do, they may not be able to do.
I keep saying that I have no problem leaving Sid during the day, but will no longer leave him alone overnight. My main worry now is that he sleeps a lot in his den chair during the day - I am concerned that he could wake up and not remember that I went somewhere or where I went. He is perfectly capable of calling me on my cell phone, but.............if he is panicky and forgetful, will he remember where he can find my number?
We just never know what they are going to do or not be able to do at any given time.
Joan, I have my cell phone number programed so I only have to push #2 then Talk. Also have childrens the same with another number. You can't do very many or you will forget who is what number.
Paul was too far along to ever use this feature but you might be able to educate Sid about it.
During my support group meeting, a member said she programed a cell phone for her husband so that ALL numbers went directly to her phone. He could push any of the numbers and get her...just a thought.
kathi, I did the same thing with DH's cell phone. It rings my cell phone. no matter what you press. He has a cell phone, so that if he gets misplaced, I can call him, and hopefull, some kind soul will tell him he's ringing (lol). I also told him, if he gets misplaced, (lost) he should look for a mommy... a woman with children who will help him. At home, I have a wall phone programed with photos on each signal button of me, my daughter, son, a friend, 911, etc. That's especially if something happens to me, and he doesn't know what to do.... call somebody!. We do our best. That's the best we can do.
My husband is in stage 6 and I wouldn't dare leave him alone anytime; he's too unpredictable. Although he's never wandered from the house, I am not sure that he won't. We have a live-in aide who after a year my husband has accepted. When we hired the aide I told dh that he was really here to help me with housework, etc and would be able to assist him with anything he needed. It took a long time for dh to accept help of any sort, but now looks forward to having the aide wash his back in the shower.
I'm not really sure what stage DH is in--probably stage 5. And I, too, will play it by ear and if it looks like things are getting 'dicey' I will see about getting an aide or someone to come in. We'll see.
Like I said, I keep inviting him to go with me but he says no. He doesn't want to go shopping, visiting,etc. He does go to church with me. Yesterday I told him I was going to the restroom and would be right back. When I returned, he was gone. He had gone looking for me up in the choir loft. One of the elders had seen him go up there and went and got him.
sn't this just the most miserable disease. No rhymn nor reason to it. I think that's what keeps us all on edge.
How many times have we said,"I should have known better"? Had to drive 75 mile to ovarian screening today. Took DH. He talked constantly on the way there and I could tell he was not as with it as he has been at home. Got into the building, I went to the bathroom, which was across the hall from the coffee shop. DH said he'd get a cup of coffee. OK. Came out and he was nowhere to be found! Finally found him wandering around with his coffee, but he was upset because he didn't know where he was or where I was. Stopped for lunch at Panera Bread on the way home. When our order was ready he wanted to go get it...I couldn't see him from where I was sitting, but finally got up to look and didn't see him at all. He was on the other side of the restaurant!
When we got back in town he wanted me to stop at K-Mart; asked to borrow some money (he doesn't like to carry much cash) and said he had to go buy "something". I suspected it was a birthday card for me because he had said earlier he wanted to take me out to lunch tomorrow on my birthday. Dropped him at the door and drove around the parking lot for a few minutes, finally saw him and picked him up. He didn't have a bag in his hand. Went home. A little later he came to me very upset and said he couldn't find what he had bought at the store. I asked if he had bought anything and he said yes, it was in a blue bag. Couldn't find it, but he did have the receipt. Took him back to K-mart and he came out with a bag.
He does so well at home and most places, AS LONG AS I AM WITH HIM! That velcro thing again. Yep, I should have known better.
Vickie, it is sad to see they function so much better with us in sight. like a security clutch- but now you know he wont stay in place if asked, you will have to keep a tighter rein on him -you were lucky to find him so readily. first time i lost mine he was over a mile down the road looking to go 'home' by the time we frantically caught up with him... divvi
Emily - I work full time and decided it was time to have someone stay with my DH. So what I did was hire a friend (from 2 to 6 pm) and I told him Jack would be coming every day to spend some time with him because he retired and was bored. So DH thinks he's going Jack a favor. In the meantime Jack is earning some extra money.
On weekends, I take DH with me to stores. He either waits in the car if it's a short chore or I take him in with me to do big time shopping. He pushes the cart and follows me around.
I am able to leave him alone for short periods, like going to Church or to do a quick errand in the neighborhood. He watches TV. I leave a note, but I'm sure he forgets he has it. In any event there hasn't been a problem with that yet.
The key word here is "yet". I know there will be changes down the road, but when and how fast will this progress.